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10/23/2008

Endometriosis Blog: Follow-Up To Yesterday's Post On Interstitial Cystitis (LINK TO VIDEO)

I'm including an abbreviated disclaimer here since I will touch on methods of diagnosing IC (see full disclaimer at the top of the homepage). Please consult your health care provider(s) for questions on treatment options for your chronic illness. Anything posted by me, or anyone who comments on my blog, should NOT be construed as medical advice.

This is a follow-up to yesterday's post on interstitial cystitis. Yesterday's post referred to a PBS documentary on interstitial cystitis. I just watched it online at the Healthy Body Healthy Mind website (see below) and it was really interesting. It's approximately 30 minutes long.

Just click the link below, click on "Women's Health" and you'll see "Interstitial Cystitis: Private Pain" about halfway down the list titled: "As Seen On Public Television"...

PBS Documentary "Interstitial Cystitis: Private Pain" on "Healthy Body Healthy Mind"

One thing I found interesting was that the potassium test was repeatedly mentioned as the means of diagnosing IC and there was no mention of "cystoscopy with hydrodistention" as being a means of diagnosing it. I have heard of the potassium test mentioned in the documentary but my IC was diagnosed (after 12 years of suffering) with a "cystoscopy with hydrodistention".

While I had had 3 previous cystoscopies by 2 different urologists, it was my 4th cystoscopy (by a pelvic pain specialist) that resulted in me finally being diagnosed, properly, with IC.

Since my diagnosis, I have had dramatic symptom relief with a combination of oral medication and bladder instillations.

The pelvic pain specialist I see treats many IC patients. His staff taught me how to self-catheterize so that I can do my own bladder instillations at home. This idea scared me at first but I have gotten used to it.

Some advantages for me of doing my own bladder instillations at home are:

* No driving to/from my pelvic pain specialist (about 45 minutes each way) for bladder instillations in between regular appointments...

* No co-pay for each treatment since there is not an office visit for each bladder instillation...

* The convenience of doing bladder instillations when I need them (according to my doctor's instructions)... rather than needing to be fit into my doctor's office hours...

There are different types of medications used for bladder instillations. My doctor has prescribed two different medications for instillation into the bladder.

I am also fortunate that my pelvic pain specialist had the foresight to order pediatric sized catheters for me. With my vulvodynia/vestibulitis, I can't imagine using anything else!

As I mentioned above, I take oral medication to treat IC as well.

In addition, I avoid acidic foods that can aggravate IC (something that is also mentioned in the documentary).

I thought this documentary was very well done. The part I found especially interesting was where they showed pictures of a normal bladder lining as opposed to the bladder lining of an IC patient. The difference in appearance was striking!

Related link:

Endometriosis Blog: Interstitial Cystitis Awareness Week October 20th-26th, 2008 (RE-POST)

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

2 comments:

Yaya said...

Talked to my new PC about IC and she said it's likely, but yet, not worth pursuing since we're trying for a baby still and medicine for it can't be used while trying to get pregnant....

Jeanne said...

Alicia,

Based on the symptoms you've described to me, I'm not surprised that your primary care doctor suspects IC.

Included below are 4 links to sites that list dietary suggestions that may help IC patients. Maybe they can help you?

http://www.ichelp.org/Treatments/SelfHelp/Diet/tabid/247/Default.aspx (Dietary suggestions from the Interstitial Cystitis Association)

http://www.ic-network.com/diet/
(Fairly detailed tips for dietary changes that may help IC patients)

http://www.allaboutic.com/allaboutic/treatment.html
(Dietary changes from All About IC)

http://bladder.emedtv.com/interstitial-cystitis/interstitial-cystitis-diet.html
(Basic outline of IC dietary tips)

I know that for me, when my IBS flares, it often triggers my IC and vice versa. My pelvic pain specialist says this is common.

I have learned that certain foods are almost guaranteed to cause my symptoms to worsen.

Everyone is different but a couple of examples of things that aggravate my IC are orange juice and tomato sauce.

I really miss orange juice but it's not worth it for me to have it. Maybe once a year I'll have it just to get an orange juice "fix".

Tomato sauce triggers my IBS which triggers my IC.

Again, everyone is different but it is widely believed that acidic foods can aggravate IC.

I hope this helps!

Jeanne

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